ABOUT STICHTING USHERSYNDROOM

Many people suffering from Usher Syndrome themselves or their partners, parents or friends are active within our foundation. They all have their own stories and experiences. The active inputs of all these people together with family, friends and colleagues make our foundation strong and make us stand out among other charitable organisations.

OUR ORGANISATION

ACCOUNTABILITY

This website gives an up-to-date report of all our activities, such as the studies that we support and the fund raising events organised by us or our volunteers. Are you interested in our financial annual report or our policy plan? You can find these documents on our website as well.

OUR MISSION

Usher Syndrome is a serious disorder, which has a deep impact on the lives of patients and their social environments.  We want to stop this disorder from the bottom of our hearts.
Therefore we have formulated our mission ‘A treatment for Usher Syndrome in 2025!’ This is our comprehensive goal, the ‘moonshot’, which all other things are derived from. This is the reason for existence of Stichting Ushersyndroom.

NETWORK ORGANISATION

Stichting Ushersyndroom is a network organisation of and by people suffering from Usher Syndrome with the support of their social environment. The main objective of the foundation is to raise funds for promoting scientific research. This research is to result in an effective treatment for Usher Syndrome.

NON-PROFIT

Stichting Ushersyndroom is a non-profit organisation. We are dependent on donations to cover the costs made by the foundation. Stichting Ushersyndroom entirely depends on volunteers who all have an affinity for or a relationship with our target groups. Therefore all proceeds from sponsoring, legacies and donations fully go to the objective of the foundation.

OUR VISION

Stichting Ushersyndroom believes in the power of a network organisation.

  • Partnership; build up meaningful relationships based on trust in each other
  • Flexible and responsive to changes
  • Working independently with room for own initiatives

CORE VALUES

The use of the word ‘Ushers’ for people suffering from Usher Syndrome is meant as a wink and refers to the meaning of the English word ’the ushers’, the messengers. People suffering from Usher Syndrome are the messengers of an important story or message. Ushers tell what they need, what help they need, what they think is important and how they experience their lives with Usher Syndrome. Therefore participation, equality, keeping in charge and trust in each other are the ultimate core values of Stichting Ushersyndroomn.

HISTORY

In June 2012, the Belt family set up Stichting MUS (My Usher Syndrome) based on the need for information. The launch of the touching documentary ‘The small world of Machteld Cossee”, helped many Ushers to openly reveal that they suffer from Usher Syndrome. The Usher community in the Netherlands has significantly grown since then. In 2016, the new board took over from the Belt family and changed the name Stichting MUS into Stichting Ushersyndroom.

CONTACT

Stichting Ushersyndroom
P.O. Box 15746
1001 NE Amsterdam
info@ushersyndroom.nl

Bank details:
Chamber of Commerce: 55 61 3004
RSIN 85 17 86 571
NL 85 RABO 0362.3905.25
BIC: RABO NL2U
in the name of Stichting Ushersyndroom [Usher Syndrome Foundation]

ANBI-STATUS

Stichting Ushersyndroom has an ANBI status, which makes your gift tax-deductible for the income tax.
The tax authority makes a distinction between a regular gift and a periodic gift. 

CBF RECOGNITION PASSPORT

Stichting Ushersyndroom is an official charity. This means that we comply with stringent quality requirements. This is supervised by the CBF.